Published: February 14, 2025

Patient and Family Advocacy in Cleft and Craniofacial Care

Working with patients, families, and advocacy groups to champion change.


Siva Chinnadurai, MD, MPH, Rajanya S. Petersson, MD, and Brianne B. Roby, MD, on behalf of the Otolaryngology Cleft and Craniofacial Committee


CraniofacialOtolaryngology has a long history of advocating to improve the lives of our patients, often through development of new treatment techniques, drugs, and technologies. However, sometimes the most meaningful advancements come from partnerships led by the patients and families we serve. This is particularly true when caring for children with facial differences. By amplifying patients’ voices and collaborating on shared goals, we can help further patient-centered advocacy efforts informed by their lived experiences and relevant to their daily challenges.

Members of the Otolaryngology Cleft and Craniofacial Committee regularly partner with families and organizations on this advocacy work. Organizations like Ear Community, cleft family camps, and opportunities for organized efforts like state lobbying days, exemplify how grassroots efforts can shape priorities and drive advocacy for crucial needs ranging from emotional support to insurance coverage.

Understanding Patients’ Challenges to Improve Care and Support

Partnering with patient and family groups offers healthcare practitioners invaluable insight into the lives of children and adults with microtia (missing or underdeveloped ears) and atresia (absent or underdeveloped ear canals resulting in hearing loss). By seeking to understand the challenges faced by patients and their families—such as navigating stigma and overcoming insurance barriers—physicians can gain a deeper understanding of how these conditions impact their daily lives. This connection not only informs clinical care but also helps highlight critical gaps in support.

Legislative Success: Establishing National Microtia and Atresia Awareness Day

Siva Chinnadurai, MD (center) with Ear Community Executive Director Melissa Tublin (left) and Program Director Caitlin Hurst.Siva Chinnadurai, MD (center) with Ear Community Executive Director Melissa Tublin (left) and Program Director Caitlin Hurst.A significant advocacy effort spearheaded by the nonprofit organization Ear Community helped combat social and medical unfamiliarity and lack of awareness surrounding these conditions. Family advocates from the group introduced House Resolution 867, establishing a National Microtia and Atresia Day of Awareness. The resolution was supported by nearly 70 medical organizations, including the AAO-HNS, and was ratified by the U.S. Congress in 2023.

Ear Community has also partnered with physicians around the country to host microtia and atresia picnics. Bringing affected people together creates psychological benefits by fostering a sense of social inclusion. Having healthcare professionals participate in these events helps demonstrate that we can be collaborative and supportive, rather than judgmental or paternalistic.

Amplifying Patient Voices in Medical Spaces

Likewise, physicians can play a pivotal role in amplifying the voices of patient advocacy groups. By bringing patients’ voices into spaces traditionally reserved for medical professionals, such as national scientific meetings, physicians can help ensure that patients’ perspectives on their needs are heard. In addition, incorporating advocacy groups as key stakeholders in patient-centered research enhances the relevance and impact of these studies. By working together, physicians and advocacy groups can co-create solutions, set meaningful priorities, and drive systemic changes that improve the lives of individuals.

State-Level Advocacy: A Model for Legislative Engagement

Left to right: Kelley Dodson, MD, Raj Petersson, MD, and Tom Gallagher, MD, representing the Virginia Society of Otolaryngology.Left to right: Kelley Dodson, MD, Raj Petersson, MD, and Tom Gallagher, MD, representing the Virginia Society of Otolaryngology.State government officials and lawmakers play an important role in advancing patient care. Many state societies have demonstrated success in this area. For example, the Virginia Society of Otolaryngology - Head and Neck Society routinely participates in lobby days at the Virginia General Assembly. The Medical Society of Virginia often informs members of potential legislation that would affect healthcare, positively or negatively. During lobby days, VSO members are divided into groups by district to meet with district and state delegates. Participating in the lobbying process firsthand can help highlight key issues, positions, and goals of the specialty. Lobbying has helped swing the vote in a favorable direction on topics related to the care of patients with facial differences including Medicaid expansion, increased access to mental health services, training of advanced practice providers, improving reimbursement, and more.

Community-Based Advocacy and Support Networks

Finally, advocacy can be found in local contexts, such as your local community and individual hospitals. Many cleft and craniofacial programs have established a special day or week when younger patients can connect while older patients and parents can develop contacts to help navigate challenging healthcare scenarios.

Minnesota cleft family camp. Left photo: Zayla and her dad participating in fishing. Right photo: Author Brianne B. Roby, MD, (center) and Sean and Liam.Minnesota cleft family camp. Left photo: Zayla and her dad participating in fishing. Right photo: Author Brianne B. Roby, MD, (center) and Sean and Liam.For example, within the Children’s Minnesota health system, the Cleft and Craniofacial Clinic Family Fun Day has been active for nearly a decade. Initially, it was just for the patients who attended the cleft clinic. However, the directors of the clinic realized that inviting siblings and parents could provide a source of bonding and advocacy for patients. Topics of discussion have included insurance coverage for orthodontic care, school districts with strong resources for patients, and support networks for social issues. Attendees bring information on how to reach out to legislators to ensure that all dental and orthodontic care is covered in Minnesota and have even helped with grant funding to provide care packages for new families who have a newborn with a cleft palate.

Advocacy at Every Level

These diverse examples highlight that advocacy is important at every level and we as the Otolaryngology Cleft and Craniofacial Committee are actively engaging on all these levels. Engaging with and advocating through community-based, local, and state activities can help support and advance the bigger national challenges that affect our patients’ health.


More from February 2025 – Vol. 44, No. 2